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Seeing a toxicologist for allergy testing - Antibiotics.

Discussion in 'Addressing Biotoxin, Chemical & Food Sensitivities' started by justy, Nov 10, 2014.

  1. justy

    justy Donate Advocate Demonstrate

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    Hi, I am attempting to take antibiotics as prescribed by KDM for chronic bacterial infections. Unfortunately my treatment has stalled as I seem to react badly to every antibiotic tried so far, I also seem to have a low tolerance for most meds and reacted badly to prednisolone.

    Someone on another forum suggested I see an allergist to have proper testing to definitively rule out allergic reaction as it is so hard to tell the difference between allergic reaction, side effect or herx.

    Rifampicin - made me almost lose touch with reality also hot flushes and breathing weird.

    Doxycycline - all over intense body itching a couple of hours after ingestion. Stopped and tried again 4 days later with exactly same response.

    Clarithromycin - Good for the first day, then on day two and three in the night, racing pulse and fast heart beat that kept waking me out of sleep every hour or so - this can be a known reaction to C and is listed as a severe reaction on the warnings side effects list.

    Doxy improves my breathing straight away (it is also an anti inflammatory, so who knows)... Clarithromycin also helped breathing and on day two my usual symptoms felt much worse so this seemed like a possible herx. However it is known for having side effects that affect the heart so have stopped for now.

    I spoke with a toxicologist this morning in a city a couple of hours away who said he could see me and do a skin prick test. I will have to give him a list of drugs to test and he will take a detailed history, examine me etc.

    I have now decided not to take any more drugs until I see KDM in two weeks time for IVIG and I will ask him his opinion then - he is also doing an echocardiogram which will be good to finally see if my heart is ok after horrible experiences with palps, near fainting fits etc.

    This is going to be very expensive, and I could do it on the NHS, but will probab;ly take many months to get an appt... I will as k my GP anyway and see what the waiting times are like.
     
  2. maryb

    maryb iherb code TAK122

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    How did you find your toxicologist @justy . I have a friend who's son is reacting to every abx they've tried so far for Lyme, this may be a useful route for her to go down. She too is very disappointed so far to say the least.

    Have you tried the herbals yet? That may be the best route, best advice is to take it so very slowly, years ago A-nd-y W-ri-ght advised his very sensitive patient on starting to dissolve one drop of Samento in a full glass of water, drink only 1/4 during the frst day, now that's what I call taking it slowly.
     
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  3. justy

    justy Donate Advocate Demonstrate

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    @maryb - I contacted allergy UK - sent them an e mail saying where I lived and that I was looking for someone who tests for drug allergies - most are immunologists and deal with things like environmental and inhaled allergens, so finding one that will test for drugs is a bit harder. The man I am going to see is based in Cardiff. If you want his details PM me and I'll supply.

    So sorry to hear about your friends son. It is so frustrating when all you want to do is get better and get on with treatment... I am going to ask KDM about herbals - apt in two weeks.
     
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  4. justy

    justy Donate Advocate Demonstrate

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    http://www.allergyuk.org/

    There is a live chat button - I spoke to them through that - in effect it isn't live chat but e mail...
     
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  5. zzz

    zzz Senior Member

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    That's my situation exactly. I also can no longer take any antibiotics.

    What you are describing with your antibiotic reactions are not allergic reactions; allergic reactions are very specific and well defined. The one exception here is doxycycline; the itching here is a known side effect, but it is also an allergic reaction, and can lead to anaphylaxis in some people. You're supposed to check with your doctor immediately if you get itching with doxycycline.

    These reactions aren't herxing reactions, since you are getting known reactions to these antibiotics, and the reactions vary by antibiotic.

    Instead, this sounds like central sensitivity, which is what I have. Based on Dr. Goldstein's writings (p. 367 of Tuning the Brain), I have been taking nebulized magnesium in combination with gabapentin, and sure enough, in the three months I have been doing this, my drug sensitivities have been slowly reversing. I can now take some supplements that I had lost the ability to tolerate. It's a slow process, though. I was surprised to find that I could tolerate the gabapentin; it's possible that the magnesium helps here.
     
  6. maryb

    maryb iherb code TAK122

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    Thanks I'll pass those details on to her, much appreciated, hope she can find someone to help, its a hard enough road as it is.
     
  7. maryb

    maryb iherb code TAK122

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    @zzz you nebulize the magnesium and take the gabapentin orally? what dose did your doctor prescribe?
     
  8. justy

    justy Donate Advocate Demonstrate

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    I need to ask KDM what he thinks... perhaps he may have a plan for me. I am also very sensitive to a lot of supplements. Feeling anxious about it all certainly doesn't help either...
     
  9. Helen

    Helen Senior Member

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    @justy , did you have a 23andme test? You might have mutations in the detoxification pathways (CYP`s and genes in the Phase I and Phase II detox system) that could explain some of your reactions.
     
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  10. zzz

    zzz Senior Member

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    That's correct.
    My doctor and I have come to an understanding. He knows I'm doing the Goldstein protocol, he's seen it work very well for me, and he's now become very cooperative. When I told him that I wanted to add gabapentin to the protocol, he said,,"What dose would you like?" I told him 100 mg 3x per day; 100 mg is the lowest dose. It took me about a week to work up to the 3x per day, but that seems to be the right dose for me. Some people gradually work up to 1600 mg 3x per day, for a total of 4800 mg. My small dose may be a big reason I can tolerate it.
    I should mention that the results of Dr. Goldstein's research are generally unknown in the wider CFS community, even among the specialists.
    Fortunately, gabapentin is an excellent anti-anxiety drug, at least at lower doses. :)
     
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  11. justy

    justy Donate Advocate Demonstrate

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    No I haven't had any done. I used to be fine with all medication until the last 5 years when my M.E became more severe - just feel like i'm being neurotic all the time or a wimp...

    My GP says the doxy reaction sounds like a definite allergic reaction and not to take it again as allergic reactions can intensify each time. H said to stop the clarithromycin so we can see if the night time pulse/heart racing continues or not. If it settles down then we will presume the C is causing it.
     
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  12. Helen

    Helen Senior Member

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    @justy I do wish you good luck with all your struggles to handle the treatment. Neither neurotic, nor a wimp...;)
     
  13. ukxmrv

    ukxmrv Senior Member

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    It's strange how these sensitivities (or whatever they are) start up. I don't know when my problems with AB's started. I only remember having 1 course of AB's as a teenager in the years before ME struck. I had been a very healthy child from a healthy family.

    Then I took multiple courses of AB's due to repeated tonsil and throat infections with the acute viral type ME onset. Somewhere in the first couple of years I noticed that already AB's were clearing up the infection for a while I always felt worse on them and after them.

    My GP started to keep records of the ones I reacted badly to. Breathing problems, heart problems and a severe emotional state unlike anything I had ever experienced in my life. This only happens when I take AB's. During those first ME years I also developed an allergy to shellfish and other multiple allergies identified at a hospital clinic.

    I tried some of the early AB protocols like Dr Jardin's but always ended up sicker. I reacted to other drugs and supplements as well. Trying Whey protein set me back a year.

    Then out of the blue something happened a couple of years ago. I had the "usual" Doxycycline for a sinus infection and when completing the course for a week felt better after. None of the usual slump lasting for months. I'm still sensitive to drugs and supplements but at least to 1 AB I can tolerate better now.
     
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  14. justy

    justy Donate Advocate Demonstrate

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    Your reactions sound very similar to mine - breathing, emotional, heart, plus I had the itching from Doxy.

    Spoke to my GP yesterday who said I must not ever take the Doxy again - definite allergic reaction - we will see when I have testing. I looked at the NICE guidelines for referral for drug allergy testing and you have to have had anaphylaxis for them to consider it or another very severe reaction that ended in hospitalisation I think...

    The cost for me privately will be £150 for initial consultation and then about £400 for the testing (takes about 3 hours of the consultants time) He wants a list of all the drugs I am concerned about as he needs to order them for injection - then he will do a skin prick test. I think while I am their I will also talk to him about my issues with perfumes etc and perhaps I can get tested for these and at least have it on record.

    Its so awful to be too sick to initiate treatment. I'm sure KDM must have seen this kind of thing before and I hope he has another plan. I am having to be careful not to read too much on Lyme sites, etc as a lot of people tell you just to push through and its just a herx, but I am not prepared to do that - not if there is the danger of making myself very severely ill with an adverse reaction. If I knew it was 'just' a herx and that it wasn't dangerous I would push through, but itching, psychosis and heart problems are not things to take lightly.
     
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  15. Little Bluestem

    Little Bluestem All Good Things Must Come to an End

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    Well they wouldn't want to catch something while it was still mild. The patients are not sufficient appreciative unless they suffer. On the downside, they are not appreciative at all if they die.
     
  16. Gingergrrl

    Gingergrrl Senior Member

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    @justy absolutely and you should never take these things lightly! I'm not sure if I understood your post, are you going to pursue the allergy testing at home or wait until you get to KDM?
     
  17. justy

    justy Donate Advocate Demonstrate

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    I will be seeing KDM first, but then have an apt with the toxicologist for two weeks later in Britain. This works well as I can ask KDM's opinion and get a list of possible drugs to be tested for.
     
  18. antares4141

    antares4141 Senior Member

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    Truth or consequences, nm
    Have you addressed any potential mold issues? If your being exposed to high levels of mold and taking abx at the same time I could see where it might be causing the problems your expirencing. I been wanting to try abx for some time now. Recently tooth started abscessing on me so I finally got my wish. Got prescibed 4 cephalexin 500 mg a day. About a day and a half in I got really sick and food and water wasn't passing through my system. About 8 hours after I initially got sick managed to puke it up. Stayed on the abx through the night, had the last one in the morning, sick in bed all day didn't eat but had some water and Gatorade puked that night too. Next morning felt much better and could hold and digest food. Stayed off about three days than started again on 3 500 mg a day. Didn't react badly and a lot of the fibro tender point like pain, brain fog and fatigue subsided drastically. So it has been an eye opener for me. Thinking I need to do antivirals also but can't get my dad to prescribe them. (He's a doc). What do lymes patients do as far as antivirals? Is it dangerous to do abx and antivirals together? Anybody done this? I'm on two 500 mg amoxicillin now. Got my dad on board for the time being would like to get him to switch me to doxy. How long do Lyme patients do abx? Sorry for all the dumb questions.
     
  19. justy

    justy Donate Advocate Demonstrate

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    Hi Antares, I don't think Lyme patients take antivirals - well not for Lyme anyway... You may want to start a separate thread to ask your questions about Lyme treatment. I think most patients that tolerate abx take them from months to years - their are a lot of success stories out there, but also a lot who say they didn't get better. Im going to ask my doctor to try herbals first.
     
  20. antares4141

    antares4141 Senior Member

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    Truth or consequences, nm
    I'm really biased towards mold being a big factor in this illness that needs to be addressed. So I can't help but wonder if those who don't get better are living in less than optimal conditions. Also wonder if the housing in UK isn't generally worse than here in the states. Being lots of it is older and packed much closer together. I am very lucky to be able to have some control over these factors. I have a metal building out in the desert with a smaller building inside of that. Interestingly though I got worse when I moved in in late 2010. In early 2011 I read about celiac disease and started a gf diet which I have stayed on. Got much better but almost as quickly started getting worse again. This is a recurring theme and one could easily assume it's all placebo. I found when I went on a french fry and meat diet I got dramatically better but that didn't last. Than I switched to distilled water. And that really helped but the effects soon wore off. Theory behind this is the minerals in the water here in south central NM are really bad. They were aggravating my gut. That was close to two years ago. No major strides until I started taking probiotics. Same thing! There was a marked improvement but it didn't last. The antibiotics have been for maybe 2 weeks now and I have been more active than ever and virtually no post exertional malaise. (compared to before anyways) To put things in perspective my dad was out here in may and I was trying to get my camper ready to go into the Gila wilderness. I crashed so hard that I was bed ridden for a day and a half and took at least a week to shake off the rest. Needless to say we didn't take my camper instead did a day trip in his truck. When I tried to stand up I got extremely dizzy weak and nauseous. The symptoms were as profound as sea sickness which is very similar. You try to stand up and you have to lay back down (after you puke over the side of the boat) without the puking. And like I said the fibro soft spots have dropped drastically, brain fog, problem solving capacity, fatigue. Just a wild theory. What if it's not lymes, but leaky gut. The antibiotics would be treating the complications from the leaky gut but possibly not the leaky gut it's self especially if it's a virus. Why I want to do the antivirals. I'm worried there isn't going to be any long term benefits to doing these antibiotics.
     

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